The diagnosis of a serious Illness. Important considerations to discuss with the Healthcare Team

Starting a Conversation with Your Healthcare Team

Whether you or a loved one have been newly diagnosed with a serious illness, or have been told your disease has progressed, you will have to make decisions about treatment. You may have many thoughts and emotions at this time. This can be a time of uncertainty and it is common to feel worried. It can be helpful to ask your healthcare team questions about what to expect, how to plan and what support and resources are available to you and your family. 

It can be helpful to ask your healthcare team questions about your illness so that you can best understand your treatment options. The following is a list of questions that may help you to make informed decisions about your plan of care. Please ask these questions if they are helpful in guiding you and your family, or ask whatever questions are important to you. It can be helpful to bring your list of questions to your medical appointment and record/write down the answers. If you have the support available, you can have someone accompany you to your appointments to listen and help record the details. 

Some questions you may ask your Healthcare Team: 

• Is the condition short or long-term? Reversible or irreversible? 

• Is the Illness curable or incurable?

• What types of treatment are available to treat the illness/condition? 

• Where is this treatment offered? Hospital? Clinic? Home? 

• What is the goal of treatment (cure, manage pain/symptoms, improve function, extend life)? 

• If the goal of treatment is to extend-life, how long does the average person live while receiving this treatment? What about those who do not receive this treatment? 

• How often is this treatment successful? 

• Does having this illness/condition impact the effectiveness of treatments/
interventions one might receive in an Intensive Care Unit? 

• What are the common risks and side effects of this treatment? Are there any possible dangers connected to this treatment? 

• Where and how often will I receive this treatment? How long do you expect this treatment to continue? 

• Is there a financial cost associated with this treatment? 

• When and how will you know if these treatments are working? 

• When or why might these treatments stop? If this treatment stops, what are other treatment options? 

• How will this treatment impact my life? What are the expected physical, emotional, psychological and practical issues? 

• What type of additional support is available to me? What about my family? 

• What are the physical, emotional, psychological and practical resources that
can help? How do I/my family access them?

It is important to take time to have conversations about your treatment with your healthcare team. Please ask questions that are important to you. Honest and open communication about your healthcare is so essential. 

Who Will Care for the Caregivers?

"If it’s a certainty that all of us will experience illness, it’s a near-certainty that most of us will care for someone with an illness. But our current conception of patient and disease seems too narrow. It may help to recognize that while patients’ needs come first, illness is often a family affair.

For many, caring for a loved one provides tremendous purpose and fulfillment. It can deepen relationships and offer the time and space for connection where it otherwise might not exist. It seems that the goal, then, should not be to reduce family caregiving, but to reduce its burdens".

Why Talking About Death Is the Key to the Longevity Revolution

"Now, in the midst of a longevity revolution with a passion to create new rituals and connections that help a community to, yes, thrive, we are recognizing that dying is also a profound and shared human experience. Its time to talk about it."

Why Talking About Death Is the Key to the Longevity Revolution by Ellen Goodman

Why is it so hard to talk about dying? @whenyoudieorg #hpm

"When heading into the unknown unprepared, we humans are rarely at our most confident. And when it comes to death, we have plenty of reason to feel anxious. It’s times like these that we need to hear from those who’ve gone before us. And that’s what our latest WYD In Focus provides: candid accounts from family members and caregivers who’ve been present at the deaths of loved ones—because understanding what happens at the bedside might surprise you."

Source: When You Die

Children's Grief Awareness Day November 17, 2016 #CGADHOPE

"Children's Grief Awareness Day is designed to help us all become more aware of the needs of grieving children — and of the benefits they obtain through the support of others. Children's Grief Awareness Day is an opportunity to make sure that grieving children receive the support they need.”

Sign the e-petition to support Bill C-277. An Act providing for the development of a framework on palliative care in Canada

Petition to the Minister of Health

Whereas:

• the 2011 Report from the Parliamentary Committee on Palliative and Compassionate Care outlined the importance of quality palliative care, which must be available to all Canadians in order for there to be a real choice at end of life;
• upwards of 70% of Canadians do not have access to quality palliative care; and
• Canadians deserve to be treated with care and compassion during their last days to live as well as they can for as long they can.

Source: E-petitions. House of Commons

Less than 600 Canadians had signed this online petition as of October 1st. 

Please sign the online petition to the Minister of Health is open for signature until November 9, 2016.

Please advocate for a national strategy and universal access to Hospice Palliative Care. Show your support for Bill C-277 to improve access to care for all Canadians.

A framework designed to guarantee all Canadians access to high-quality palliative care

This enactment provides for the development and implementation of a framework designed to guarantee all Canadians access to high-quality palliative care. 

1. This Act may be cited as the Framework on Palliative Care in Canada Act.

Development and implementation

2. (1) The Minister of Health must, in consultation with the representatives of the provincial and territorial governments responsible for health, as well as with palliative care providers, develop and implement a framework designed to give Canadians access to palliative care — provided through hospitals, home care, long-term care facilities and residential hospices — that, among other things,

(a) defines what palliative care is;

(b) identifies the palliative care training and education needs of palliative health care providers; 

(c) identifies measures to support palliative caregivers;

(d) collects research and data on palliative care; 

(e) identifies measures to facilitate a consistent access to palliative care across Canada; and

(f) evaluates the advisability of amending the Canada Health Actto include palliative care services provided through home care, long term care facilities and residential hospices.

Source: Parliament of Canada

The End Game: Conversations about Life and Death #hpm #ACP

Throughout life, we celebrate milestones - weddings, births, anniversaries - but the milestone that we are most often afraid to confront is one of the most impactful - death. 

For many people, talking about end-of-life is uncomfortable or even taboo. But sooner or later, we all face death. What fears are holding us back from having essential conversations that will improve our own lives and the lives of those we care about? 

We understand that death is informed by the lived experience and want to create opportunities for the lived experience to be better informed. We have just launched a new series creating public forums to empower people to have conversations about living and dying. We want to foster opportunities for the general public, healthcare professionals, first responders, health science students, residents of long term care, financial planners, faith communities and community organizations to talk about living and dying. We strive to normalize conversations about living and dying in a non-judgemental, non-denominational, upbeat and interactive session. We aim to provide attendees the opportunity to consider their values and receive credible resources regarding advance care planning and end-of-life care.

For more details about our free event or to register please follow this link to EventBrite

#Palliative Care is not about #dying, but about quality of #living @JMyersPallCare #hpm

There are a multitude of misconceptions surrounding Palliative Care - what it is and what it isn't. Sadly, many are not open to the prospect of Palliative Care because it presented as a departure from "active care" or moreover they believe that Palliative Care is only provided at end of life. It is in fact so much more than that... I truly appreciate this article demystifying the scope and breadth of Palliative Care written by Dr. Jeff Myers, a Palliative Physician, empathic clinician, extraordinary advocate and educator...

"At a time when assisted dying dominates discussion about end-of-life care, I think it’s important to address public fears around palliative care so that people can use the information to improve their quality of life.

Palliative care is not what happens when all treatments have failed. It does not mean “giving up” or “stopping the fight.” If you are fighting cancer or Lou Gehrig’s disease, palliative care means a team of people — such as doctors, nurses, social workers and others — will help make sure you have what you need to continue fighting.

As a palliative care physician, I am deeply committed to improving end-of-life experiences for people and their families. My focus is not on the disease itself but on the impact it can have, like relieving the severity of symptoms with the overall goal of improving quality of life.

It’s my job to know what matters to you and to make sure you’re not spending time and energy on bothersome symptoms that needlessly wear you down. Pain is a good example: terrible pain from cancer can be exhausting, consume a ton of energy and is worse for the body than any medications aiming to manage the pain. There is no need for a person fighting cancer to also try fighting pain.

There is now very clear evidence that people who receive specialized palliative care actually live longer than those who do not. This is why it’s so important to understand that palliative care is not about giving up — far from it. It’s about living the very best you can for as long as you do."

@CanadianHPCAssn #National #Hospice #Palliative Care Week Busting the #Myths #hpm

National Hospice Palliative Care Week will run May 1-7, 2016 under the theme Hospice Palliative Care First and features an FAQ, Mythbusters, and includes information for health care professionals.

"There are many ways to start the conversation about end-of-life care in Canada. Spreading awareness and education is one of the best ways to advocate for change and ensure that every Canadian has access to quality hospice palliative care.

Visit the official Advance Care Planning website at www.advancecareplanning.ca for resources to share and distribute.

Learn about the integrated palliative approach to care developed by the Way Forward project at www.nationalframework.ca

Use the “Power of 10” materials developed by the Canadian Hospice Palliative Care Association to spread the word about hospice palliative care in your communities. These materials can be found here: www.chpca.net/week

Spread the materials developed for this year’s campaign “Hospice Palliative Care First” found here: www.chpca.net/hpcfirst "

MyGrief.ca helps you to understand and work through your #Grief. @VirtualHospice

"MyGrief.ca Because losing someone is hard. MyGrief.ca helps you to understand and work through your grief.

• Confidential
• Access in the privacy of your own home
• Developed by families and grief experts
• Stories from people who have "been there"
• A resource for professionals"

@DianeSAckerman on What Working at a Suicide Prevention Hotline Taught Her About the Human Spirit @brainpickings

“Choice is a signature of our species. We choose to live, sometimes we choose our own death, but most of the time we make choices just to prove choice is possible. Above all else, we value the right to choose one’s destiny. The very young and some lucky few may find their days opening one onto another like a set of ornate doors, but most people make an unconscious vow each morning to get through the day’s stresses and labors intact, without becoming overwhelmed or wishing to escape into death. Everybody has thought about suicide, or knows somebody who committed suicide, and then felt “pushed another inch, and it could have been me.” As Emile Zola once said, some mornings you first have to swallow your toad of disgust before you can get on with the day. We choose to live. But suicidal people have tunnel vision—no other choice seems possible. A counselor’s job is to put windows and doors in that tunnel”.

Important Conversations with Experts in the Field about #Dying and #Death. #hpm

Important conversation about supporting quality of life and the need for universal access to Palliative Care - the comprehensive care supporting individuals and families facing a life-limiting illness from time of diagnosis to end-of-life and into bereavement.

#Alone on the Range, #Seniors Often Lack #Access to #Health #Care. #QOL

“In most of the United States, families help with driving, shopping and activities of daily living as their relatives age. When adult children leave their rural homes, a key component of elder care goes missing.

‘There’s a question of whether people have to go into nursing homes prematurely’ because they lack family caregivers, Dr. Glasgow said.

In their absence, neighbors and churches can play compensatory roles. Her research in rural areas has shown that older adults actually prefer to accept services from their churches rather than from government programs.

Satellite clinics and telemedicine can help bridge some of the health care gaps. For digitally adept older adults, the Internet already allows easier shopping, entertainment and social interaction.

Dr. Glasgow, among others, has called for better transportation options and for more senior housing, so that rural communities can bring services to clusters of people who need them.”

Why we need better #end-of-life #policies in #seniors’ residences. #LTC

“How we die is regularly in the headlines as we await government legislation to be tabled in response to the 2015 Supreme Court of Canada decision legalizing physician-assisted dying. Palliative care gets less attention, but it is what most of us will want at the end of life: drugs to relieve agitation, pain, agonal breathing and other symptoms. Nurses can provide soothing medications, but only after doctors have issued prescriptions, often with increasing dosages. But as the Crosbie family discovered, doctors are few and far between in long-term care facilities, especially on weekends. Their experience is a cautionary tale.”

In #Palliative #Care, #Comfort is the Top Priority. #HPM

"Although 40 percent of their palliative care patients can expect to be cured, 'there clearly still are both patients and oncologists who have an inappropriate association in their minds,' he said. 'They still associate palliative care with giving up.'

To the contrary, palliative care can help patients live fully, regardless of their prognoses."

A thank you letter to David Bowie from a #Palliative #Care doctor

“So… to the conversation I had with the lady who had recently received the news that she had advanced cancer that had spread, and that she would probably not live much longer than a year or so. She talked about you and loved your music, but for some reason was not impressed by your Ziggy Stardust outfit (she was not sure whether you were a boy or a girl). She too, had memories of places and events for which you provided an idiosyncratic soundtrack. And then we talked about a good death, the dying moments and what these typically look like. And we talked about palliative care and how it can help. She told me about her mother’s and her father’s death, and that she wanted to be at home when things progressed, not in a hospital or emergency room, but that she’d happily transfer to the local hospice should her symptoms be too challenging to treat at home.

We both wondered who may have been around you when you took your last breath and whether anyone was holding your hand. I believe this was an aspect of the vision she had of her own dying moments that was of utmost importance to her, and you gave her a way of expressing this most personal longing to me, a relative stranger.

Thank you”.

Baby Boomers' Last Revolution Will Be Changing the Way We Die. #HPM

"Each person should have the chance to decide when it is time to shift from health care toward a cure to health care for comfort and pain management, as many doctors choose to do for themselves. That means giving us and our families the information and support they need. Death is not quick and simple, like in the movies. Just as they have learned to do with childbirth, health professionals need to learn to talk to patients and their families about what to expect. That knowledge provides reassurance and a sense of control. It is more important than any advanced directive or pain relief".

Inconsistent and inadequate patchwork of palliative care across #Canada needs to be priority. #HPM

"Federal and provincial governments need to guarantee access to palliative care in legislation, the Canadian Cancer Society said Tuesday as it released a report on the state of care across the country.

In its findings, the society said critically ill patients are falling through the cracks of the health care system and improvements are needed to address the patchwork of service that exists.

In the absence of national standards, individual jurisdictions are left to develop their own policies, programs and guidelines that result in inconsistent and inadequate palliative care, the report said".

#Family Speaking out in Support of Palliative Care. #HPM

Click on the photo above to watch the story of one Family sharing their experience following a diagnosis of advanced cancer and their subsequent experience with Palliative Care.